National Thalassemia Screening and Prevention Registry

Thousands of children in Pakistan are born with thalassemia each year, despite existing provincial laws that promote genetic screening and counselling. These policies remain largely fragmented, with inadequate monitoring, limited digital infrastructure and poor interoperability.

To address these shortcomings, Shared Blood proposes the National Thalassemia Screening and Prevention Registry (NTSPR): a federally coordinated digital framework connecting accredited screening facilities with existing marriage-registration systems. Through targeted legislative amendments, registrars could verify screening compliance using authenticated digital certificates, without accessing confidential genetic information.

Supported by accessible genetic counselling, data protection safeguards and nationwide awareness campaigns, the NTSPR would strengthen enforcement of existing legislation, promote informed reproductive decisions, and help reduce future cases of severe thalassemia.

Thalassemia is a serious inherited blood disorder that often requires lifelong treatment, usually blood transfusions and iron chelation therapy. After generations of consanguineous marriage, even couples with no shared immediate family can be at risk. To limit its spread, couples need to be tested and given proper genetic counselling before marriage.

of the population carries the beta-thalassemia gene

5–8%

Pakistanis are carriers

~10 million

children are born with thalassemia each year, about 25 a day

~9,000

patients are registered with thalassemia organisations

50,000+

Many more cases go undocumented, and most patients receive transfusions only infrequently.

Provincial authorities have tried to limit the spread of thalassemia in different ways, but most efforts have fallen short for one main reason: there is no unified registry that Union Council registrar offices can access.

• Punjab

  Thalassemia Prevention Act 2025

  Introduces genetic screening requirements linked to admission to educational institutions, to create a genetic registry. The system is not connected to any Union Council registrar office.

• Islamabad Capital Territory

  Compulsory Thalassemia Screening Bill 2026

  Passed by both houses of Parliament, proposing premarital screening requirements for the federal capital. Its operational implementation and final enactment status still require confirmation.

• Khyber Pakhtunkhwa

  Preventive Health Act 2009

  Required Nikah registrars to obtain premarital screening for thalassemia and hepatitis C, but was largely unimplemented or bypassed through fake certificates.

• Sindh

  Prevention and Control of Thalassemia Act 2013

  Required genetic information to be entered into a data bank, but was not implemented. In January 2026 the Sindh Assembly passed a resolution recognising the Act’s failure and calling for its proper implementation.

Shared Blood proposes the NTSPR as a federal-provincial collaboration, supported by targeted amendments to existing thalassemia legislation and the relevant marriage-registration rules.

1. 1

   National digital registry

   A secure, interoperable platform run by participating health authorities. Accredited laboratories would electronically register authenticated test results against verified identities, using NADRA identity verification, without adding genetic information to the national identity database.

2. 2

   Mandatory certificate verification

   Authorised Union Council and Nikah registrars would verify a digitally signed screening certificate through existing civil-registration systems. The check would confirm identities, that the certificate is genuine, and that required screening and counselling were completed, without showing carrier status or clinical reports.

3. 3

   Genetic counselling and informed choice

   Couples identified as having a higher reproductive risk would receive confidential counselling explaining inheritance chances, reproductive options and available medical support. A positive carrier result would not prohibit marriage.

4. 4

   Legislative harmonisation

   Provincial governments would amend screening laws and registration rules to recognise NTSPR certificates, define registrars’ responsibilities, set penalties for fraudulent certification, and provide independent appeals and lawful exemptions. Federal legislation would govern the framework in Islamabad Capital Territory.

5. 5

   Accessibility and data protection

   Participating governments would provide free or subsidised screening and counselling, prioritising underserved districts. The registry would use informed consent, restricted access, encryption, audit logs, independent oversight and safeguards against genetic discrimination. Offline verification and assisted registration would serve areas with unreliable connectivity.

6. 6

   Phased national implementation

   A federal-provincial steering committee, including health authorities, NADRA and local-government representatives, would oversee a 12-month pilot followed by an evaluated expansion. Indicators would include verified screening coverage, counselling completion, detection of certificate fraud, district-level access to services, and long-term changes in affected births.

7. 7

   Grassroots awareness

   A public awareness campaign, similar to existing polio campaigns, would launch alongside the legislation. Provincial governments would set up camps in underserved communities, working with local religious leaders so that the new marriage-registration process is welcomed, and a national campaign would run public service announcements across broadcast media.